Metastatic endometrial cancer

124

Comments

  • kkstef
    kkstef Member Posts: 688 Member
    snyderpm said:

    Update after last chemo and great CA 125
    I had my last chemo (Taxol/Carboplatin) a month ago this past Tuesday, and saw the doctor Monday. My CA 125 was 7 and I started Megace at 5ml or 200mg on Tuesday. I feel the best I have in a long time, and I hope the Megace doesn't ruin that. The same time last year my CA 125 was 7 after my first operation and then in October it was 325, so I am trying not to get to carried away with myself. Taxol/Carbo is some nasty stuff, but at least we can say that the Taxol/Carbo did its job. My strength is a little better now and I am trying to get back to my weight lifting, walking/jogging and riding my horse.

    I will let you know if I have any bad side effects from the Megace.

    Time to Celebrate, Snderpm
    Iam so happy to hear that you have had your last Taxol/Carbo and your CA125 is only 7. That is wonderful news! I can appreciate your reticence aoubt going over board on the celebration, but just enjoy each day. What more can we do?

    I am glad that you are getting your strength back and know you will be back to your usual activities before you know it. You are determined person and I know you will give it your all.

    Please keep us updated on your progress.

    Wishing you many more years of dancing NED!

    Best wishes always! Karen
  • kansasgal
    kansasgal Member Posts: 122 Member
    snyderpm said:

    Update after last chemo and great CA 125
    I had my last chemo (Taxol/Carboplatin) a month ago this past Tuesday, and saw the doctor Monday. My CA 125 was 7 and I started Megace at 5ml or 200mg on Tuesday. I feel the best I have in a long time, and I hope the Megace doesn't ruin that. The same time last year my CA 125 was 7 after my first operation and then in October it was 325, so I am trying not to get to carried away with myself. Taxol/Carbo is some nasty stuff, but at least we can say that the Taxol/Carbo did its job. My strength is a little better now and I am trying to get back to my weight lifting, walking/jogging and riding my horse.

    I will let you know if I have any bad side effects from the Megace.

    Pat! Good-on-ya!
    Pat!

    My sweet Australian mother-in-law often congratulated a well-done effort by saying, "Good on ya" (Good for you). I've been following your struggle through chemo and am delighted to read that your hard work has paid off so well! What a nice CA-125 reading!

    I was fortunate not to need Neulasta, so did not have to go through the pain mentioned by some posters on this site. Of course I know not everyone who has Neulasta experiences the pain.

    Today I saw my gyn/onc for my every 4-month check-up and PAP. My annual CT results were available and showed that I remain NED. Whew! I feel fine and hope that you, too, will have a similar report a year from now - and two years from now - and three years from now . . .

    Please keep posting about you experience with Megace - good or bad.

    Again, well-done!

    Sally
  • snyderpm
    snyderpm Member Posts: 40
    kansasgal said:

    Pat! Good-on-ya!
    Pat!

    My sweet Australian mother-in-law often congratulated a well-done effort by saying, "Good on ya" (Good for you). I've been following your struggle through chemo and am delighted to read that your hard work has paid off so well! What a nice CA-125 reading!

    I was fortunate not to need Neulasta, so did not have to go through the pain mentioned by some posters on this site. Of course I know not everyone who has Neulasta experiences the pain.

    Today I saw my gyn/onc for my every 4-month check-up and PAP. My annual CT results were available and showed that I remain NED. Whew! I feel fine and hope that you, too, will have a similar report a year from now - and two years from now - and three years from now . . .

    Please keep posting about you experience with Megace - good or bad.

    Again, well-done!

    Sally

    Great CA-125 two months after chemo
    I thought I would update on my recovery from chemo and how the Megace is treating me. I finally got over the chemo to where my hair, eyebrows and eyelashes are growing back. It was 2 months Tuesday 17 since by last chemo of Carbo/Taxol. I have been feeling pretty good and can even jog 1/2 mile now.

    I have been taking the Megace for a month, and it kind of has an astringent effect on your mouth, and some things don't taste just right, but not real bad. I am taking the liquid, and I might switch to the pills. Another side effect, is I am constipated, and have to take Colace everyday. I am taking 5ml or 200mg of Megace each day, which amounts to a teaspoon. I do think about food more than I did in the past, but I can control it right now.

    The really good news is that my CA-125 is now 3.9. Even I feel good about that. I am sorry to say, I am still not optimistic. When I read what Linda, Songflower,Ro10 and others are going through, I feel lucky. I hope I stay lucky.
  • snyderpm
    snyderpm Member Posts: 40
    kansasgal said:

    Pat! Good-on-ya!
    Pat!

    My sweet Australian mother-in-law often congratulated a well-done effort by saying, "Good on ya" (Good for you). I've been following your struggle through chemo and am delighted to read that your hard work has paid off so well! What a nice CA-125 reading!

    I was fortunate not to need Neulasta, so did not have to go through the pain mentioned by some posters on this site. Of course I know not everyone who has Neulasta experiences the pain.

    Today I saw my gyn/onc for my every 4-month check-up and PAP. My annual CT results were available and showed that I remain NED. Whew! I feel fine and hope that you, too, will have a similar report a year from now - and two years from now - and three years from now . . .

    Please keep posting about you experience with Megace - good or bad.

    Again, well-done!

    Sally

    Great CA-125 two months after chemo
    I thought I would update on my recovery from chemo and how the Megace is treating me. I finally got over the chemo to where my hair, eyebrows and eyelashes are growing back. It was 2 months Tuesday 17 since by last chemo of Carbo/Taxol. I have been feeling pretty good and can even jog 1/2 mile now.

    I have been taking the Megace for a month, and it kind of has an astringent effect on your mouth, and some things don't taste just right, but not real bad. I am taking the liquid, and I might switch to the pills. Another side effect, is I am constipated, and have to take Colace everyday. I am taking 5ml or 200mg of Megace each day, which amounts to a teaspoon. I do think about food more than I did in the past, but I can control it right now.

    The really good news is that my CA-125 is now 3.9. Even I feel good about that. I am sorry to say, I am still not optimistic. When I read what Linda, Songflower,Ro10 and others are going through, I feel lucky. I hope I stay lucky.
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    snyderpm said:

    Great CA-125 two months after chemo
    I thought I would update on my recovery from chemo and how the Megace is treating me. I finally got over the chemo to where my hair, eyebrows and eyelashes are growing back. It was 2 months Tuesday 17 since by last chemo of Carbo/Taxol. I have been feeling pretty good and can even jog 1/2 mile now.

    I have been taking the Megace for a month, and it kind of has an astringent effect on your mouth, and some things don't taste just right, but not real bad. I am taking the liquid, and I might switch to the pills. Another side effect, is I am constipated, and have to take Colace everyday. I am taking 5ml or 200mg of Megace each day, which amounts to a teaspoon. I do think about food more than I did in the past, but I can control it right now.

    The really good news is that my CA-125 is now 3.9. Even I feel good about that. I am sorry to say, I am still not optimistic. When I read what Linda, Songflower,Ro10 and others are going through, I feel lucky. I hope I stay lucky.

    Great numbers!
    If you start at the beginning of this thread describing your unexpected recurrence and just skip to this last one, it is a very optimistic response you've had. I think I understand your cautious side of it. Afterall, the sneeky little monster showed up again after hiding somewhere and avoiding bullets for years. May you continue to recover from the nasty chemo and regain all of your strength (and hair). Congratulations.

    Suzanne
  • HellieC
    HellieC Member Posts: 524 Member

    Great numbers!
    If you start at the beginning of this thread describing your unexpected recurrence and just skip to this last one, it is a very optimistic response you've had. I think I understand your cautious side of it. Afterall, the sneeky little monster showed up again after hiding somewhere and avoiding bullets for years. May you continue to recover from the nasty chemo and regain all of your strength (and hair). Congratulations.

    Suzanne

    Stay optimistic
    Great news about the CA 125 levels. Please try to stay optimistic. We all wait for the other shoe to drop, but it doesn't for everyone! You feel well - try to enjoy every day. Easy to say, I know, but we have to try!
    Kindest thoughts
    Helen
  • snyderpm
    snyderpm Member Posts: 40
    HellieC said:

    Stay optimistic
    Great news about the CA 125 levels. Please try to stay optimistic. We all wait for the other shoe to drop, but it doesn't for everyone! You feel well - try to enjoy every day. Easy to say, I know, but we have to try!
    Kindest thoughts
    Helen

    Update on CA-125
    Well, it has been about 3 months since my last Carbo/Taxol treatment. If you recall my 2 month CA-125 was 3.9, and last week it was 4.1. So at least I am flying high at 3 months. My blood work is still not perfect, with the WBC being normal, but the RBC still a little low. I also have a somewhat high BUN reading. But, when you think about the poison they give us, it is a wonder we are still alive. I feel good, and do about what I want. I try not to think about the future, because it will be what it is.
  • Fayard
    Fayard Member Posts: 438 Member
    What else...?
    You mentioned hysterectomy only. Did you have chemo the first time?
  • snyderpm
    snyderpm Member Posts: 40
    snyderpm said:

    Update on CA-125
    Well, it has been about 3 months since my last Carbo/Taxol treatment. If you recall my 2 month CA-125 was 3.9, and last week it was 4.1. So at least I am flying high at 3 months. My blood work is still not perfect, with the WBC being normal, but the RBC still a little low. I also have a somewhat high BUN reading. But, when you think about the poison they give us, it is a wonder we are still alive. I feel good, and do about what I want. I try not to think about the future, because it will be what it is.

    First Cat Scan since Chemo
    Well it has been 4 months since my final Chemo and I had my first Cat Scan a few weeks ago and it was all clear. That was a relief. I also had blood work done a few days ago, and my blood profile is completely normal now, and my CA 125 remains at about 4, and I might add I feel real good. I can honestly say I don't feel like I just went through 1 1/2 years of hell. I would like to tell you about the Cat Scan. I had a reaction to the dye and I swelled up and looked like a big red tomato. I took a lot of Benadryl for a couple of days and then just a couple a day, but it took a full week for the swelling and red to go completely away. I didn't feel bad or have any shortness of breath. They are no going to give me the dye anymore. Right now, it is hard for me to believe I ever had cancer or that it is going to come back again.
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    Fayard said:

    What else...?
    You mentioned hysterectomy only. Did you have chemo the first time?

    Congratulations
    This is looking good, Snyderpm. I like reading the optomism in your post - such a different perspective than 6 months ago. This is just wonderful.

    Best,
    Suzanne
  • california_artist
    california_artist Member Posts: 816 Member
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  • snyderpm
    snyderpm Member Posts: 40

    Congratulations
    This is looking good, Snyderpm. I like reading the optomism in your post - such a different perspective than 6 months ago. This is just wonderful.

    Best,
    Suzanne

    still getting good CA 125 and Cat Scan
    I know it is not that long since my last chemo, 6 1/2 months, but CA 125 continues to be real low at 4.4 taken end of Sept and Cat Scan completley negative. My Gyn/Onc seemed to be surprised how well I am doing. My hair has also grown back enough, so I don't have to wear wigs or hats anymore.

    If you recall, my original cancer, endometrial adenocarsenoma, at a low grade and stage came back in less than 6 month after a complete hysterectomy. The cancer came back in my abdomen and omentum. I continue to take Megace everyday. I hope this helps some of you.

    Good luck with your treatments. Pat
  • snbdye2000
    snbdye2000 Member Posts: 6
    snyderpm said:

    still getting good CA 125 and Cat Scan
    I know it is not that long since my last chemo, 6 1/2 months, but CA 125 continues to be real low at 4.4 taken end of Sept and Cat Scan completley negative. My Gyn/Onc seemed to be surprised how well I am doing. My hair has also grown back enough, so I don't have to wear wigs or hats anymore.

    If you recall, my original cancer, endometrial adenocarsenoma, at a low grade and stage came back in less than 6 month after a complete hysterectomy. The cancer came back in my abdomen and omentum. I continue to take Megace everyday. I hope this helps some of you.

    Good luck with your treatments. Pat

    Thank you for the update
    Thank you for the update Pat. It was interesting for me to read all the original postings. I had the exact same original treatment and diagnosis as you. Only to find myself 6 months later with three tumors in my pelvis area. I meet with my oncologist this tuesday and hopefully she will have a treatment plan for me. Your story is encouraging for me though. I have been on Megace for two months though, originally put on it to gain weight, but maybe it's helping the tumors too!
  • snbdye2000
    snbdye2000 Member Posts: 6
    snyderpm said:

    still getting good CA 125 and Cat Scan
    I know it is not that long since my last chemo, 6 1/2 months, but CA 125 continues to be real low at 4.4 taken end of Sept and Cat Scan completley negative. My Gyn/Onc seemed to be surprised how well I am doing. My hair has also grown back enough, so I don't have to wear wigs or hats anymore.

    If you recall, my original cancer, endometrial adenocarsenoma, at a low grade and stage came back in less than 6 month after a complete hysterectomy. The cancer came back in my abdomen and omentum. I continue to take Megace everyday. I hope this helps some of you.

    Good luck with your treatments. Pat

    Thank you for the update
    Thank you for the update Pat. It was interesting for me to read all the original postings. I had the exact same original treatment and diagnosis as you. Only to find myself 6 months later with three tumors in my pelvis area. I meet with my oncologist this tuesday and hopefully she will have a treatment plan for me. Your story is encouraging for me though. I have been on Megace for two months though, originally put on it to gain weight, but maybe it's helping the tumors too!
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member

    Thank you for the update
    Thank you for the update Pat. It was interesting for me to read all the original postings. I had the exact same original treatment and diagnosis as you. Only to find myself 6 months later with three tumors in my pelvis area. I meet with my oncologist this tuesday and hopefully she will have a treatment plan for me. Your story is encouraging for me though. I have been on Megace for two months though, originally put on it to gain weight, but maybe it's helping the tumors too!

    Great news again!
    Just keep surprising them, Pat.

    Suzanne
  • snyderpm
    snyderpm Member Posts: 40

    Thank you for the update
    Thank you for the update Pat. It was interesting for me to read all the original postings. I had the exact same original treatment and diagnosis as you. Only to find myself 6 months later with three tumors in my pelvis area. I meet with my oncologist this tuesday and hopefully she will have a treatment plan for me. Your story is encouraging for me though. I have been on Megace for two months though, originally put on it to gain weight, but maybe it's helping the tumors too!

    Sorry for your recurrence
    Hopefully, the Megace will shrink the tumors. They just operated on me again and scraped all the cancer cells out of my abdomen and removed my omentum. I had cancer cells in many places, so my prognosis was not good. But, now after the chemo and several months of Megace, it seems like things are looking up. Please let me know what your treatment plan is, and I wish you luck. Pat
  • ratajczaktrudy
    ratajczaktrudy Member Posts: 7
    Hysterectomy

    Hi I am new to this website, never thought I would get cancer. I had a Robotic hysterectomy 2 weeks ago. The doctors removed all my female body parts including cervix.they told my husband everything looked good. They tdid him no chemo and 90 percent chance that I didn't need chemo. Ian only 52 with teenage kids.ijust went to my First post op visit. The doctor said my cytology report showed there were cancer cells in my pelvic ,abdominal wall. He is putting me on Megace for a year, then he will do a laparoscopy to check for further cancer. I am a little scaried to wait a year to see if this med worked. I wonder if any one else who was told grade 1 cancer, but then told the pelvic washings had cancer cells. From what I read megace slows the growth of cancer. Sometimes I wonder if I had a total abdominal hysterectomy if they would of got the cancer, because its contain in the uterus. I found out after the surgery. In Robotic they chop up the uterus into pieces two microscopic cells are able to escape. I requested the reports path and cytology to see what it saids. My sister in aPA and brother prescribes radiation treatments. I thought about talking with the doctor to see if hormone therapy was the best way to go. They say uterine cancer is slow growing. Also I learned in nursing school that if you have radiation treatment  several years later you an get a different kind of cancer. Right now I am still pretty swollen sore and very tire. How long does it take to get rid of this fatigue. The doctor plans on sending me back to work 6 weeks after surgery. I thought that was to soon since I work12.5 hour shifts and push a med cart with computer and do heavy lifting. A friend of mine who had a vag hysterectomy and a desk job took 8 weeks off. The resident doctor told me my work insurance dictates when to go back to work. I don't want to worry about hat right now ,but hopefully I hope the tiredness stops , the abdominal swelling goes down and I feel better. I hope to find if the megace does the trick but so far the websites I read give options but not whether it worked. Hate to have my treatment in doctors hands who won't no for sure whether a med works or not. Thanks

  • ratajczaktrudy
    ratajczaktrudy Member Posts: 7
    Hysterectomy

    Hi I am new to this website, never thought I would get cancer. I had a Robotic hysterectomy 2 weeks ago. The doctors removed all my female body parts including cervix.they told my husband everything looked good. They tdid him no chemo and 90 percent chance that I didn't need chemo. Ian only 52 with teenage kids.ijust went to my First post op visit. The doctor said my cytology report showed there were cancer cells in my pelvic ,abdominal wall. He is putting me on Megace for a year, then he will do a laparoscopy to check for further cancer. I am a little scaried to wait a year to see if this med worked. I wonder if any one else who was told grade 1 cancer, but then told the pelvic washings had cancer cells. From what I read megace slows the growth of cancer. Sometimes I wonder if I had a total abdominal hysterectomy if they would of got the cancer, because its contain in the uterus. I found out after the surgery. In Robotic they chop up the uterus into pieces two microscopic cells are able to escape. I requested the reports path and cytology to see what it saids. My sister in aPA and brother prescribes radiation treatments. I thought about talking with the doctor to see if hormone therapy was the best way to go. They say uterine cancer is slow growing. Also I learned in nursing school that if you have radiation treatment  several years later you an get a different kind of cancer. Right now I am still pretty swollen sore and very tire. How long does it take to get rid of this fatigue. The doctor plans on sending me back to work 6 weeks after surgery. I thought that was to soon since I work12.5 hour shifts and push a med cart with computer and do heavy lifting. A friend of mine who had a vag hysterectomy and a desk job took 8 weeks off. The resident doctor told me my work insurance dictates when to go back to work. I don't want to worry about hat right now ,but hopefully I hope the tiredness stops , the abdominal swelling goes down and I feel better. I hope to find if the megace does the trick but so far the websites I read give options but not whether it worked. Hate to have my treatment in doctors hands who won't no for sure whether a med works or not. Thanks

  • ratajczaktrudy
    ratajczaktrudy Member Posts: 7
    Hysterectomy

    Hi I am new to this website, never thought I would get cancer. I had a Robotic hysterectomy 2 weeks ago. The doctors removed all my female body parts including cervix.they told my husband everything looked good. They tdid him no chemo and 90 percent chance that I didn't need chemo. Ian only 52 with teenage kids.ijust went to my First post op visit. The doctor said my cytology report showed there were cancer cells in my pelvic ,abdominal wall. He is putting me on Megace for a year, then he will do a laparoscopy to check for further cancer. I am a little scaried to wait a year to see if this med worked. I wonder if any one else who was told grade 1 cancer, but then told the pelvic washings had cancer cells. From what I read megace slows the growth of cancer. Sometimes I wonder if I had a total abdominal hysterectomy if they would of got the cancer, because its contain in the uterus. I found out after the surgery. In Robotic they chop up the uterus into pieces two microscopic cells are able to escape. I requested the reports path and cytology to see what it saids. My sister in aPA and brother prescribes radiation treatments. I thought about talking with the doctor to see if hormone therapy was the best way to go. They say uterine cancer is slow growing. Also I learned in nursing school that if you have radiation treatment  several years later you an get a different kind of cancer. Right now I am still pretty swollen sore and very tire. How long does it take to get rid of this fatigue. The doctor plans on sending me back to work 6 weeks after surgery. I thought that was to soon since I work12.5 hour shifts and push a med cart with computer and do heavy lifting. A friend of mine who had a vag hysterectomy and a desk job took 8 weeks off. The resident doctor told me my work insurance dictates when to go back to work. I don't want to worry about hat right now ,but hopefully I hope the tiredness stops , the abdominal swelling goes down and I feel better. I hope to find if the megace does the trick but so far the websites I read give options but not whether it worked. Hate to have my treatment in doctors hands who won't no for sure whether a med works or not. Thanks

  • NorahS
    NorahS Member Posts: 92

    Hysterectomy

    Hi I am new to this website, never thought I would get cancer. I had a Robotic hysterectomy 2 weeks ago. The doctors removed all my female body parts including cervix.they told my husband everything looked good. They tdid him no chemo and 90 percent chance that I didn't need chemo. Ian only 52 with teenage kids.ijust went to my First post op visit. The doctor said my cytology report showed there were cancer cells in my pelvic ,abdominal wall. He is putting me on Megace for a year, then he will do a laparoscopy to check for further cancer. I am a little scaried to wait a year to see if this med worked. I wonder if any one else who was told grade 1 cancer, but then told the pelvic washings had cancer cells. From what I read megace slows the growth of cancer. Sometimes I wonder if I had a total abdominal hysterectomy if they would of got the cancer, because its contain in the uterus. I found out after the surgery. In Robotic they chop up the uterus into pieces two microscopic cells are able to escape. I requested the reports path and cytology to see what it saids. My sister in aPA and brother prescribes radiation treatments. I thought about talking with the doctor to see if hormone therapy was the best way to go. They say uterine cancer is slow growing. Also I learned in nursing school that if you have radiation treatment  several years later you an get a different kind of cancer. Right now I am still pretty swollen sore and very tire. How long does it take to get rid of this fatigue. The doctor plans on sending me back to work 6 weeks after surgery. I thought that was to soon since I work12.5 hour shifts and push a med cart with computer and do heavy lifting. A friend of mine who had a vag hysterectomy and a desk job took 8 weeks off. The resident doctor told me my work insurance dictates when to go back to work. I don't want to worry about hat right now ,but hopefully I hope the tiredness stops , the abdominal swelling goes down and I feel better. I hope to find if the megace does the trick but so far the websites I read give options but not whether it worked. Hate to have my treatment in doctors hands who won't no for sure whether a med works or not. Thanks

    Welcome to the site...sorry you had to join...

    I don't have time for a long reply right now, but my reaction to your explanation of your medical care (so far) is for you to get a 2nd opinion. Preferably with a gyn/oncologist.

    Please post again.